Thursday, December 5, 2013

SSDI and Money

I've been in the process of comparing Medicare Part D (drug) plans over the past few weeks. Because the deadline is almost here (December 7th), the website is quite slow so I thought I'd do a post.

I want to preface this by saying I'm extremely grateful for SSDI and Medicare and I'm also very glad I applied for SSDI when I did or else I'd be in worse shape financially. Even though what I'm about to describe is difficult I feel okay (mostly) about it. It's actually a hopeful post so keep reading!

Physically I've been slowed down by a bout of muscle spasms in my back as well as some sort of virus. For anyone who hasn't experienced muscle spasms they are extremely painful! When they occur I can't move and can't help but cry out from pain. They have been occurring many, many times a day.

I saw a neurologist for my back the Weds before Thanksgiving who confirmed that it was muscle spasms. I couldn't even bend over so he could do a full exam of my back. When he felt it he was shocked by how "rigid as a rod" it was. He took me off Flexeril, put me on Baclofen, ordered physical therapy and asked me to bring in the scan of my MRI again. He was concerned that it is protecting further deterioration of my discs and progressing herniation. It turns out Baclofen can be good for M.E. also.

Back to the topic. I run out of money about 10-12 days prior to when I get my SSDI check on the 3rd. This month I had a couple unexpected expenses which put me further behind. My cat peed on my bed wrecking the mattress pad and I discovered my DVD player is broken (it had access to amazon prime). Because the Holidays are tough emotionally (and financially) I wanted to be able to watch Amazon prime for free shows so I bought a used, cheap, old Roku player that had Amazon prime. You can easily find one on craigslist for $20 or less.

This led me to being short much earlier and consequently not being able to replace the soap I'd run out of so I had to use shampoo (makes me so grateful for soap) for a few days. My nephews b-day was earlier this week and I couldn't even afford a card!

Tonight I was at a meeting. I wore the only shoes I can wear (Keen's sandals). I didn't have socks on. A friend noticed and commented that it was 37 degrees out (we are in an unusual cold spell) and that I needed to wear socks! Luckily the meeting was starting so I didn't have to tell her that I only had one pair of socks (which needed washing) and couldn't afford more right now (I do have white thick crew (?) socks but I can't wear them with Keen's).

Because my immune system is so poor (confirmed by testing done by the neurologist who said "you're immune system isn't working all that well") I've developed a raging fungal infection on both feet. The bottoms are symptomatic. My toe nails are so thin they break easy. Two fell off completely. Last night while closing the curtains I bumped into something with my big toe. The toenail bent in half. Oh my god that hurt. When I got upstairs half the nail was standing upright from the nailbed.

Because my back is so bad I had to figure out a way to cut the toenail off. I tried all sorts of positions finally finding one where I was barely able to reach the nail. But I cut it off and put neosporin and a band aid on it. I ended up having to take Advil and woke up in bad stomach pain because of the gastritis. I'm laughing as I type because its all so ridiculous!

I can't afford a podiatrist right now so I'm dealing with it the best I can. In January I'll email my M.E. doctor to see if he would be willing to prescribe an antifungal. I can't afford any more meds this year so it will have to wait.

Medical bills have piled up but I'm making payments as best I can. I had to take out Care credit for the endodontist.

This is the reality of living with a serious chronic illness and relying on SSDI and Medicare.

Am I enjoying my life?

YES! I am enjoying my small, limited life!

I'm grateful for the ability to socialize. It's nothing like what I did when I was healthy but just to be able to talk to someone face to face or get a hug is such a gift to me now.

There are some really tough days and life is hard but I am so grateful for the little things like soap. Or knowing I have little budget for food this month, feeling grateful for the tangerine tree out in the yard that I raided earlier.

Or sitting in a meeting with my stomach growling because I was so hungry. The woman next to me chuckled when she heard it. I did have a moment of trying to fight off tears. But she handed me a tangerine and I sat there so glad for her and the tangerine (which I ravished immediately).

I had to laugh awhile ago. I was at a thrift store close to where I live hoping they would have warm things in my size (they didn't). It's in a rough neighborhood and serves a rough crowd. Some are people like me who are simply poor for whatever reason but some...whew! Scary!

I used to shop at Macy's and Nordstroms. At Nordstrom's there would be nice, soothing piano music playing in the background.

While at the thrift store there is an overhead announcement that gets played over and over: "attention all shoppers. Please do not leave your child unattended at any time...". Lol!

Such a different life. One I never expected to be living.

But I wouldn't trade it for the world if it meant being bedbound again. I was rereading my blog last night. I was really, really sick like so many people are still (The Canary in the Coal Mine film's description is so apt "the most devastating disease that your doctor has never heard of"). The suffering that goes with that level of sickness is deep, immense.... and so profound that suicide seems like a good option...and then on top of that having to deal with the stigma and stupid things people say. I still can't listen to music from that time period because it brings it all back.

I have fought tooth and nail (no pun intended) to gain the limited functioning I do have. I spend all my money on medications sold both in and out of this country (Ivabraden, Mimosa Pudica, etc..) but I'm able to get out most days a week now for about an hour or two (sometimes more and sometimes less and sometimes not at all).

I'm a survivor. I'm determined and I'm resilient no matter what the hell anyone else says or believes. I was told at one point that there was no more improvement to be had and to save my money for other things. Thank God I didn't listen to that. For a long time I felt like a failure because I kept being told to think positive but I was so filled with grief and fear (not to mention being so sick) that I couldn't. There were times when I wanted to shout back "don't you get it?The most positive thing I can do is stay alive today!" I can't be around that type of attitude anymore. I am not a failure.

I am dealing with some other very difficult things that have nothing to do with M.E. If I listed them people would be shocked. But its further proof of my inner strength.

I may be poor financially. I have a car that needs work. Sometimes the hood won't shut all the way and I have to drive around like that. I get about 8-10 miles to the gallon. It needs A LOT of work, lol. But it gets me to where I'm going (knock on wood) and for that I'm grateful.

But I feel rich in spirit. I am moved to tears by beautiful sunsets. I feel deeply connected to nature. Even though its freezing cold I'm enjoying it. I love putting the chickens to bed each night and hearing there soft cooing as I bid them goodnight. The moonlight guiding my footsteps as I traverse through the leaves trying to avoid chicken and dog poop. I'm meeting people. I find I care about each of them deeply even though I don't know them. My compassion and empathy run deep because of the suffering I've gone through (and continue to).

At night I dream of special places. The night before last I dreamt I was in Europe and loved it. It was time to go back home. I didn't want to. My mom made the plane reservations because I couldn't understand the flight plan. I love that she is so closely walking with me right now (I've had multiple dreams of her appearing and helping me).

So yes I love my small life. I love everything I have. I'm content. It's not without times of self-pity or wishing I had more or tears of grief for the life I could have led...or for the life I lost. But I'm alive and I'm finding ways to give back...small as they may be....and small as my life is....I'm incredibly grateful and very, very lucky. I have found the right help I need. I have a good therapist. I'm getting the right direction. I'm developing deep spiritual life....so yes-dare I say it? Will it tempt fate if I admit it?

To Contact Me:

Links

About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help